How do you provide a palliative care nursing service to a
population of 30,000 and growing, clustered in small towns and scattered
across remote rural areas in a region of more than 11,000 square
kilometres, much of which is mountainous, with just a handful of
district nurses and one dedicated palliative care bed?

That's the considerable challenge facing the nursing services
manager (NSM) for Central Otago Health Services Ltd, Debi Lawry, and
district nursing charge nurse Carolyn Dobson, both based at Clyde's
Dunstan Hospital. There's been a Dunstan Hospital since 1863 but
the current facility bears scant resemblance to a rural "cottage
hospital". It was extensively refurbished in 2005, with a new wing
added, which houses the 24-bed acute medical unit, Vincent Ward. This
includes a three-bed high dependency unit, a two-bed assessment unit and
a one-bed palliative care unit. The palliative care bedroom, which has
an ensuite, opens onto an enclosed garden and affords glorious views of
the surrounding countryside. A family room opens off the bedroom and has
full kitchen facilities, a sofa bed, two lazy-boy chairs, a small table
and a flat screen television.

The hospital is the hub of a wide range of services to its
far-flung population. Central Otago Health Services Ltd is the
community-owned, not-for-profit company responsible for providing these
health services, largely funded through Southern District Health Board
contracts.

Lawry has been the NSM since 2007, a migrant from Auckland, now
living in Wanaka. Before taking up her role at Dunstan Hospital, she had
a nursing leadership position at Dunedin Hospital and in Auckland was
the clinical nurse consultant for the neonatal unit.

Palliative care at the hospital is provided through a team of
enrolled nurses (EN) under the direction and supervision of the charge
nurse or associate charge nurse. "We have four very experienced ENs
who provide continuity of care for our palliative patients," Lawry
said.

How is it that ENs provide the backbone of the in-patient
palliative care nursing service? "Well it has evolved over time.
One of the ENs, Anne Moore, has had a very long-held passion and
interest in palliative care, including completing some postgraduate
work. Together with the other ENs, she provides a practical, caring and
supportive service to palliative patients and their whanau," Lawry
explained.

The hospital does not provide hospice-level care. "It is a
real issue for us - how do we provide the support the hospice in Dunedin
provides for patients? We provide symptom control and end-of-life care.
But we can't take on patients for extended periods of time because
we are very much an acute medical ward. So sometimes patients who need
palliative care for extended periods have to go to Dunedin, which is
three-and-a-half hours away for a Wanaka-based patient--that's a
major dislocation."

An Otago Community Hospice co-ordinator, Catherine Lynch, spends a
good deal of time in Central Otago and offers support to the inpatient
and community palliative care nursing services and to the region's
GPs.

The hospital has a palliative care committee, which decides how
donated money should be spent. "The community has a real sense of
ownership of the hospital so it is very well supported through
donations, hence we have excellent palliative care equipment and patient
information and education resources," Lawry said.

But Lawry would really like more community palliative care staff.
With just 4.5 FTE district nurses, the time requirements of quality
palliative care, the challenge of the region's geography and
weather, and the need to maintain excellent communication with the
region's 26 GPs in seven medical centres, which can be compounded
by distance, providing quality palliative care nursing is always going
to be demanding.

In Lawry's ideal world, she would love to employ a palliative
care nurse specialist, with advanced education, to work with patients,
families and hospital and community staff. "This nurse could also
link with the other agencies involved, with GPs, provide high-level
clinical support and promote consistency of care, and oversee the needs
of those in the community. I think it is a critical position. Our
district nurses do a brilliant job but their workloads are already
really full. Our community misses out, as there are no longer-term
hospice beds locally and sometimes that is what these people need."

There is an average of two palliative care patients every week in
the region.

Lawry says despite their geographical isolation, nurses have access
to good education through a variety of means. A Christchurch-based
palliative nursing specialist, Anne Morgan, runs study days; a Dunedin
Hospital palliative care nurse specialist, Helen Cleaver, provides
education sessions via a telehealth service; a retired local GP, Hettie
Rodenberg, who worked with Elizabeth Kiibler Ross, has worked with the
staff, emphasising the importance of staff caring for themselves; the
mobile surgical services bus, which visits every few weeks, also
delivers telehealth education. A 0.3 FTE nurse educator organises all
the education. Whitireia Community Polytechnic also provides week-long
block courses towards postgraduate study. And Lawry says there's a
great deal of knowledge and experience among the very stable staff.

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Lawry and her staff continually work to improve the service. An
evening service is being developed at present. "We are developing
the criteria for the service at the moment. If a family needs a district
nurse visit to ensure everything is as good as possible for the night,
we want to be able to provide one. It had started in an ad hoc way, with
a nurse popping in on their way home to check on a patient. We are not
entirely sure how we are going to manage such a service. How do we do it
in Wanaka, where there are only two nurses, who have a hugely busy
workload as it is? How do we do it when it is only required
intermittently? These are interesting dilemmas we are trying to work
through."

Dobson is a rural representative on NZNO's College of Primary
Health Care Nurses and chair of its policy and communications standing
committee. She is also part of a strong southern district nurses'
network and has tapped into her many contacts for suggestions about
setting up such a service. Lawry says ideas have been "pouring
in" about how best to provide the evening service.

Co-ordinating community palliative nursing care falls to Dobson,
who works four days a week and often plugs the gaps in the palliative
service. She's been in the role for seven years, having worked in a
number of rural hospitals and as a practice nurse in Alexandra for seven
years. "This role is totally different from the nursing I had
experienced. It has made me realise what challenges rural district
nurses face daily. They are often working and living in the same
community, they are in people's homes for all manner of reasons and
they have to be a jack of all trades--I see them as generalist
specialists."

How the tyranny of distance impacts on their work is exemplified in
a 200-kilometre round trip a district nurse made each day on a weekend
to flush a PICC (peripherally inserted central catheter) line. Or a
nurse travels 50 kilometres, only to discover the patient does not have
enough drugs at hand and the nearest pharmacy doesn't stock the
required strength of morphine. "Every car has a palliative care box
but we don't have access to drugs, so sorting out those issues can
take a lot of time," Dobson said. "Being organised and
foreseeing such problems helps, but streamlining everything, including
all the communication needed, can be quite difficult." She
estimates between 0.4 and 0.6 FTE district nursing time is devoted to
travel.

The hospital runs a chemotherapy clinic and two of the district
nurses also work there. Often staff have been working with a patient on
their cancer journey before the palliative phase.

Palliative care referrals come from GPs, the hospice or the
hospital. "Most patients are cared for by the family but we are
there to provide the intensive nursing at the end of life - checking
skin integrity, ensuring nausea and pain are under control, ensuring the
patient has enough drugs on board and is comfortable, managing
continence issues, making sure the family has the right equipment in
place and they can get some breaks. I see us as the
'sweepers', waiting for the right moment to enter the home,
the moment that suits everybody. Sometimes we begin too early, sometimes
too late," Dobson said.

She believes the duty of care for a dying patient should be shared
between GPs and the district nurses, with the hospice as a back up if
required. She is glad of the hospice care co-ordinator's specialist
role. "She provides knowledge, back-up and support, which is
invaluable."

Dobson cites the case of the mother of two young children, who
wanted to die at home - "a cottage in the depths of winter" -
and to be cared for by her family and particular nurses. "Her
family cared for her wonderfully and the GP provided her with everything
needed for symptom control. I visited twice daily to change her syringe
pump, wash her and monitor her. One day she said she wanted to have a
bath. It was impossible for me to do that on my own so I called on
Catherine, who came to the cottage with me on her day off. As well as
being able to help with a bath, she was able to give expert advice and
was a great support to me in a very tender situation."

'Emotionally draining'

Palliative care nursing can be very emotionally draining--"I
think it is the dissipation of hope that makes it so sad and such a hard
job."

Many people retire to Central Otago from major centres and expect
the same level of services as those they left. But there is a lack of
infrastructure, resources and qualified staff to provide 24-hour
palliative care nursing. "Trying to meet demand and expectation
with an already overloaded district nursing service is exhausting and
challenging, but it is also rewarding, if it can be achieved,"
Dobson said.

The nurses can have a daily caseload from 15 to 22 patients in one
area and more often than not there are two or three palliative cases at
once. "A lot of the onus falls on families. Often they are put in a
position where they don't know how to, or even nescessarily want
to, nurse their loved one. Carer fatigue is very common. If a family
member is a nurse that is a help but if the family has never cared for
anybody before, it can be very difficult. We try as hard as possible to
respect the patient's wishes but sometimes admission to hospital is
the best option. We tell the family it is not about failing - it is
almost as though we can give them permission to come into hospital. And
it is a very nice place to be. It can be very difficult to monitor a
patient at home and give them the palliation they need. Sometimes they
can go into hospital and, once their symptoms are under control, they go
home again," Dobson said.

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Another challenge of living and working in the same community is
that nurses are sometimes contacted by friends or relatives after hours
for advice or help. "Nurses often feel obligated to be involved
inadvertently and this can leave the nurse feeling vulnerable and the
nurse/patient boundary can get very blurred," Dobson said.

She believes two nurses and two hours is required for a palliative
care visit. "As well as the nursing and personal cares, the
potential for drug errors is high and the family usually has lots of
questions. We can usually call back in the afternoon or at the end of
the day - there is some flex in terms of visiting when people are dying
but trying to work out the balance can be a real challenge."

Dobson says a good work/life balance is essential. "When there
are no palliative patients we get a break and our reserves go back up
again. All the district nurses are part-timers. This means different
nurses visiting patients. Patients don't always like this but it
prevents burn-out. All staff try to support each other and debrief
regularly. A counselling service is available. There is no formal
clinical supervision but it is available if needed."

Dobson is realistic about the level of service the district nurses
can provide to those who are dying. "Some deaths go really well and
others don't. There is still work to be done to ensure every death
goes as well as possible. Despite the challenges of working in this
large rural region, the district nurses often go beyond the call of duty
to facilitate excellent palliative care. But there are times I feel our
shoulders aren't broad enough for the job we have to do."